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This pulse was the easist to date as it usually takes at least one week post pulse before I have energy to get anything done. I was so lucky with this one as the kids had a day off last Monday and mine was sick with virus all week. Today was the first day back to school. My legs ache but that seems to be my only issue. My next pulse is planned after spring break, April 16. The other good news I have is we have been trying to sell a colonial here in MI for 2 years. We bought this ranch due to this disease about 2 years ago. The Real Estate market crashed in MI as everyone is moving out due to declining automotive business. We finally have a rental deal, we were unable to sell but we will rent to a family that is coming from Germany for 3 years and we hope the market here in MI will recover by 2010 when we will try to sell that house again. If I have recovered, maybe we will try to sell both homes and see which one sells as I will be able to live in the other. We do not have many ranches in our area and I think this ranch we live in now would be the one more desireable of the two. Most of our furniture resides in the house we were trying to sell and it is coming home end of this month as renters need a home by April 2. All the card tables and chairs will be packed away here and all my decor is coming here, very exciting. So we will be moving by month end and that will keep us busy! I am planning on getting my family on NACi in the next week or so and I will let you know if NAC flu goes around.

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This is two days post pulse and I am happy to report I am feeling pretty good. Legs ache but what is new. Yesterday, I worked out in am, vacuumed and cleaned out my van which I have not done in years. I keep the outside clean as I only have to drive through the car wash so again this is a marked improvement. I also stayed outside most of the day and it was almost 80 degrees here in MI. The heat usually really bothers me - wipes me out, so it will be interesting to see what will happen this summer. Saturday (last pulse day) I also sat out in sun during soccer game and went to park and was able to get into car without help. Normally the heat affects my spastic muscles and I can't bend my legs - Mr. Wiggy has to help load me into car but Sat. I was able to do it myself as my legs were bending. My energy is good.

Gosh, cleaned out your van? I'm in total awe, well done. As for the heat, beware of doing a pulse when it is very hot: it can still totally wipe me out, yet at other times affects me much less than before. We bought a portable infra red sauna, the sort that you keep your head on the outside, and I soon discovered that I couldn't use that when on tinidazole. Twenty minutes and I couldn't even move right leg to get out, but today, fine.

Sarah

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Hi Sarah,
Thank-you for the heat advise as I was sitting at the soccer game wondering if I was going to get a sun burn but was ok. Two Sat. ago we were freezing at the game and last Sat. it was beautiful but I was not prepared with sun screen.

I started my husband on NAC and he hates taking pills...so far he is ok - but wants to know how I need to run experiment - any advise?

Copied from CPN. When I started NAC I only got a slight sniffle for a few days but DW got far more of a reaction. This was after I had been on abx for about eighteen months, so we probably neither of us had much infection left by then. Some people have reported no reaction but then have started CAP and their MS symptoms have improved, so its not a hard and fast rule. Whether infected or not, to carry on taking it will help guard against an infection in future, but if he really doesn't want to, don't push him: he might well have been infected by anyone if not you, but managed to fight it off, some people do. Just keep some available and handy in case he has second thoughts at any time.

Sarah

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Energy - much better, feel that I am able to get a lot more things done everyday. Also, I use to be in bed for a day or two after having friends over for dinner or going out to friends houses - no longer an issue.

Gums/Teeth - confirmed by dentist - "keep doing what you are doing". Gums no longer bleeding - no cavities this year!

Hair/Fingernails - Much better shape - growing non stop

cognitive skills - can read for longer periods of time and out of the fog most of the time

Vision/Cataracts - unchanged

Overall Health - I did not catch any bacterial infectionsi from my daughter last year - big improvement - I use to get every single one.

Somewhat Improved:
In this area I have had improvements that come and go:

Writing - Most days improved
Buttoning, cutting.... - most days improved
Bladder - most days improved
Heat Tolerence - I can handle heat a little bit better - 80 degrees use to wipe me out - now not as much as a problem. I stay clear of 90 degree days as 90 degrees does wipe me out.
Spastic Muscles - some days good and some days not so good
Balance - sometimes improved.

The hardships of treatment for me are muscle, joint pain and swelling in my legs. This has been going on for months but it has been very painful these last few weeks that I am unable to sleep through the night. I prop up my legs, wear those tight socks and take extra aleve but find the only relief is when I get up for about 30 minutes to relieve the pain so I can fall back to sleep.

I see my neuroi tomorrow.
I plan to discuss continuing full protocol with my GP in the next few weeks.

I have given up distractions that take me away from protocol - ie Girl Scout cookie sale.

This year I want to Focus on sticking to protocol, PT, nutrition and reading. I would like to go back to work next year.

Mamahawk - at my appointment my neuro said, if you are stable keep doing what you are doing, if not new meds. I am so thank-ful. I noticed you know exactly how many lesions you have. The report use to give a number but the last 3 MRI's stopped giving me numbers. I wonder if its because I have too many - I am going to ask my neuro.

Just an update - pulse 13 is underway and I have noticed a few changes:
My leg pain at night is no longer waking me up - this went on for a good month. I would wake up in so much pain I would have to get up, take aleve, go online - I am sleeping like a rock now, catching up. I hope it doesn't return to soon as I am enjoying my sleep but at least I know it will end.

Burn - My arm is still wrapped up but it has stopped ozing just yesterday. This took over a month. I will continue to keep it wrapped as it looks like someone poured acid under my wrist. My best friend overnighted me a hot tea solution that requires not having to pour hot water - it is great. My nutrionist sister wants me to drink 4 green teas / day and I think its helping with detox. I feel better.

Toes - are slowly getting better but I think I still have 4-5 months to go.

Hair is still falling out.

PT is going great, however, my walking is still poor. We are working on standing - leg strength, trunk and getting off ground for example if I fall - how to get back up. It is like I have forgot how to do this - so its a matter of reproggramming.
We have a script for left foot apo but she will wait until walking is better. My spasticity has been bad again - I am waiting for another break. I plan to stay with PT as long as my insurance allows - I need to call.

I see my MD next Friday and I hope I feel ok after this pulse - pulse ends Tues.

My daughter had some books stolen out of her backpack which was in a cubby in the classroom by a classmate. I was shocked.
I told the teacher I can't believe kids at 7 are stealing. This child said her mom wouldn't order any books off the monthly book order (which I only order once in awhile) so she took my daughters and one other childs. We got most of the books back but she hid one and her poor mom can't find it. Crazy.

Excellent Wiggy, that your leg pain has gone and you can sleep through the night. No chance of late night bumping into me now!

Green tea is very high in antioxidants so it is bound to do you good. It makes you calm as well.

Hair: both before and for a while after starting CAP my hair was forever falling out and when David was training, if he saw a load of MS women together, thin hair seemed to abound, being able to see the scalp of some of them. Now, though, my hair hardly falls out at all. Sometimes it looks as though I have a lot in my hairbrush, but when I pull it away, I realize that it is only because it is now so long.

I'm glad your PT is going well. As you build the strength in your legs your walking should improve, but working on how to get back up if you fall is an excellent scheme.

Good luck with your MD appointment next week!

Sarah

An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Hi Sarah,
Yes, I am not up and on line curretly in the middle of the night as I am sleeping through and enjoying it but it was interesting being online with others in the middle of the night.

I plugged up the shower with my hair fall out and I know it will stop one day. My hairdressers mom will come over tonight to give my daughter her first piano lesson. I want to learn how to play too. My sister let me borrow a small portable key board to start on.

My PT is great - no one had the guts in the past to let me work on getting up from ground as this has been a problem for several years. It is a lot of work. MY PT is tiny - doesn't weigh much but very strong.

I am at pulse #15 and this was a hard one to start up but I did it. I was feeling so good that I kept making excuses to not start like My sister is in town from Texas and I am being fitted for an AFO so maybe I should hold off....
That being said, this was the easiest pulse to date almost like it never happened.
I had runny nose, stomach upset, ached a little, stiff at times and teary but I was walking around with walker feeling very strong day #1 post pulse. I wasn't so tired I couldn't function.
The one change I made was adding back NACi (only 750 mgs)which I stopped again because I was having bad reactions. I added it back a few weeks ago after reading willows blog. I had few reactions - like a runny nose - I could not believe it.

I got my afo yeaterday but the only problem is it will not fit in any of my shoes. I will shoe shop Thursday. I think it will help my walk as I used it with a sock yesterday. I am dragging left foot and it helps me pick it up.
PT is going very good - everything I gain back I keep - I am on my feet more and more but still need to build stamina and work on my gait.

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